Hope for Gus Up and Running!

This post was originally posted on 3/15/10 on Wordpress: Welcome to our new blog here on Blogspot!

Hello,

Welcome to the Hope for Gus Foundation’s blog. Our son, Gus has Duchenne Muscular Dystrophy – we have been blogging on Caring Bridge, but wanted to broaden our audience, so these first couple of posts may have a ‘middle of the stream’ feel…

Here we go:

Things have been busy…Gus was fitted for his night splints, which he wears to bed every night like a trooper. I think he complained ONCE and now it’s just routine. They keep his heel cord stretched, which helps a lot with mobility. He has also started aquatic therapy and he loves it. Water is great for him because he feels weightless – which probably feels wonderful after straining himself to get around all day.

A few weeks ago we were visiting Steve’s mom up in Vermont. Gus woke up one morning and said to Steve, “Daddy, I had a dream last night. I dreamed that my legs didn’t work.” After asking him to repeat himself a few times, Steve brought him to me and had him tell me about his dream. We were stunned and wondering if it was just a fluke, or if he really has some idea about the progression of his disease. As fas as he we know, he only realizes that he wears braces and takes medicine to “keep his muscles strong.” He didn’t seem upset by the dream…just very matter of fact about it, but it was just very strange.

Anyway, we are making a lot of progress with the foundation, including choosing a name. A very special thanks goes out to fellow Francestownian Janet Hazel for suggesting “Hope for Gus.” We love it because we truly believe that if we don’t have hope, we have nothing. So, the Hope for Gus Foundation is soon to be up and running. We have a board of directors, are filing the paperwork, and have our website up. Check it out at www.hopeforgus.com You can find out more about DMD, learn how to organize a fundraiser, or donate online. We’re very excited about this – it’s a wonderful way to feel like we’re actually doing something to help Gus and other boys like him. 100% of the proceeds will go to research to help treat and/or cure DMD.